Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Thursday, November 15, 2012

Our Story Continues...We have to do SOMETHING...

Every morning before the doctors do their rounds I get my morning wake up call from Doctor Chung. He comes in early to ask how the night went, what my concerns or questions are and what's on the schedule for today. It is so easy to talk to him about what I am thinking. It's really helpful since I stay up all night, thinking and crying and wondering what is next. He is truly compassionate about Hailey's case.

(OllieFur Therapy Cat)

When the rest of the Neuro team comes around we discuss wanting to try IVIG treatments again. Hailey has really deep veins from being so swollen from steroids, and even though she is off them now it is going to be a while before we see that skinny little face that I have forgotten about. Josh and I ask the head of the team if IVIG would be an option and was so pleasantly surprised when he said that he wouldn't mind trying it...it wouldn't hurt (Please remember this part!!) I had said that I understand how expensive IVIG is and that it's not something to waste, but if it works...The Doctor said jokingly, "don't worry, we sprinkle that stuff like pixie dust here." I felt a sense of relief. Hailey has had IVIG treatments before like I have blogged about in the past. Nothing has ever went wrong before, and every time after IVIG we had seen incredible improvment. If we do see improvement this time it will lead them to think this may have something to do with an autoimmune brain disease which would lead us in a different direction. The one difference in this IVIG treatment is that they want to place a PICC line. A line they will place in a big vein in Hailey's body that will rest right above her heart. They need to place her under sedation again...for the third time in less then a week. I ask how long the line stays in and they say they will remove it before we leave...when we leave...whenever that is.
The placement surgery lasts about 1 hour and they do it right in the room, but Josh and I have to leave. I don't think I could stand watching any more procedures at the moment anyway. Josh asked if I wanted to go get something to eat while we wait. I can't eat right now, and besides I have had more corn dogs in the past week then I have in my whole life. We decide to wait on the patio. I grab my phone and Josh grabs his iPad and we sit on the patio with our electronic devises and another couple comes out on the patio with their baby. They sit in front of us and they are holding their baby, holding each others hand and talking to each other. It got me thinking. That's how they are coping with whatever they are going through. They are better at it then I am.

The hour goes by, slowly...and Hailey is out of surgery and the PICC line is in her arm. They will use the PICC line to draw blood and administer the IVIG. They will start tonight. They gave Hailey this cute little pink blanket with Frogs. Every time I turn around someone at the hospital gives her a new blanket. Whom ever is making them and donating them to the Children's Hospital, THANK YOU!

I have time to waste until Hailey comes out of sedation. They had left the daily craft in the room and since Hailey doesn't wear a size 7 1/2 flip flop I decided to make the craft. You take strips of fabric and tie them around the flip flops and they are like HUGE pom poms. So I ended up with some new shoes. They didn't stay on very long, the hospital was so cold so I had to put my socks and boots back on!

The next day after IVIG I am looking for any small sign that something is happening or going to happen. She isn't using her hands, she isn't talking and she still has extreme spasticity and is still taking the Baclofen. I am still waiting to see a result in regards to that. I try getting her to talk to move her arms and hands, but I am not getting far.
We just happen to be at the hospital for Hospital Bingo. We went down to the playroom to participate. If you are unable to go to the playroom they also broadcast it on TV and you can call in with your Bingos. Everyone's a WINNER at Hospital Bingo!

We were lucky that even though we were SO far from home we have a lot of friends in Utah. Our Friend Allison brings us dinners and then our Friends Josh and Lindsay bring us goodies from a wonderful place called The Sweettooth Fairy. They also bring their sons who play games with Hailey and put a smile on her face.

Hailey enjoying music therapy. We want to try and get her to keep using her hand so we put a maraca in it. That night didn't go very well. For some reason Hailey is vomiting. They give her Zofran and keep an eye on her monitors but are curious as to why that happened. In the mean while I tell the Doctors that she's not eating or drinking. Something seems worse?

The next day. Hailey wakes up Happy. The Kids Crew comes around and every kid picks a prize for being "Brave Today." She picks a hide and seek "bean bag." You can see her PICC line in her right arm. I decide to dress her in real clothes. Everyone likes her "Super Hailey" shirt.

We go for our daily walk around the hospital and we run into Roxy a therapy dog at the hospital. Roxy and Hailey hit it off. Roxy is the first small dog that we've seen. All the other dogs have always been big dogs. Roxy reminds Hailey of her dogs at home.

Towards the end of our trip we get a visit from Josh's parents. It's always helpful to have family around and they are only a phone call a way when we need them. Right before they got to Utah Hailey was having more and more morrow reflexes. It was so uncomfortable to watch her go thru that.

This is our To Do list on this floor. We are still continuing with therapy and IVIG and I have a lot of questions going through my head.

-Hailey is basically a wet noodle and her head keeps flopping off the side of her wheelchair headrest. I bring that up to the nurse and she tells the Rehab team and they end up sending a representative from the wheelchair company to our room. He looks at the chair and gets on the phone to order us a winged headrest. It'll be waiting for us when we get home. The techs name was Jared and incredibly helpful!

-Still on the subject of wet noodle I am incredibly concerned about giving Hailey baths. We tried in the hospital and it was a 3 person job. Josh ended up getting half way in the tub to hold Hailey up while I soaped her up and rinsed her off. I can't do that on my own, and it's terrible unsafe. We find out that there are bath chairs that are adjustable to be laid down in but insurance doesn't cover those because it's "not a necessity" to take a bath in a bathtub. Insurance.
The nurse calls out PT and they said they will see what they can do. Not even a few hours later they come in and say that a bath chair was donated to the hospital with instructions for it to be given to a child that would benefit from it. They asked us if we would like to have it. This is that chair:

I am speechless? There was someone that donated something so expensive? Wow! This chair will make it so much easier and safer for Hailey to be able to take a bath and Thank you to whoever you are that donated it!

- One last concern was a car seat for Hailey. The one we came with would not be the one she was going to be able to leave with. She has no trunk or core strength and can't keep her head up in her booster chair. They call the Car Seat specialist to come and look at Hailey and see what she might need. They suggest this:

Just earlier that morning Josh had to take our 15 year old blazer the the mechanic because the brakes were going mushy. We just had to pay $700 to get that fixed. Now they are saying we need this car seat for Hailey. They see the blood drain from my face. I start to have a panic attack. I guess I should have waited for the tech to finish her sentence. She said that she could get us one if we could pay $50...What? Huh? Excuse me? There was one donated to the hospital to be used at a Special Needs Carseat Clinic and they are able to sell it to us for $50. In-Crebible!

Now by this point I kinda feel as if I had 3 wishes and I just used them up. This hospital was going above and beyond. They cared and they are helpful. This was the hospital we needed to be at. I wish we had been here on August 6, 2011.

The last night of IVIG was pretty bad. Hailey was not eating, not drinking, vomiting, sweating, had a fever and no one knew why. Since she can't turn over and puke we have to have suction. So we pretended that we needed to do some housekeeping and vacuum her mouth. It was enough to put a smile on her face and suction the vomit. Again they gave her zofran and some rectal tylenol. The day after the final IVIG treatment they said that we could go home. Josh's parents would be coming home with us. We would take a few days to get home, but before we left I asked again if I should be concerned about her not eating and drinking as much as I think she should be. One of the doctors from the pediatrician unit had said that maybe she isn't drinking as much because we have her on IV fluids and she doesn't feel thirsty. Maybe once we take her off them she feel thirsty and drink? Well she's the doctor right...wrong! I still felt uneasy about her going home and not eating. I addressed how she doesn't look like she can eat safely, she looks scared when she eats. They said that once she gets used to the mechanical soft diet she was put on she should start eating again...keep an eye on it.

We were ready to go home. We had been here for over 10 days. 10 Very long, stressful days. It was already late in the day by the time we got all situated and ready to go. We decided to have Josh check out of the Ronald House and we got a room where we (Josh's parents and us) could be close enough we could grab them if we needed help with Hailey. We tried to go get something to eat that night and again Hailey wouldn't eat or drink. She just wanted to sleep.

We laid in bed and relaxed getting ready for what we thought was going to be a good nights sleep. Hailey kept waking up screaming. I would rotate her and she'd fall back to sleep, but I kept thinking this kid HAS to be so hungry. Tomorrow we would head out to Cedar City and sleep there for one night and continue onto Vegas. Before we left Salt Lake there was a place I HAD to stop:

The Sweet Tooth Fairy bakery. Their cake bites and cupcakes are beyond yummy, and priced fairly well so we stopped.

On our way home with the 5 of us in the car and a wheel chair, bath seat and 5 suitcases we headed out of Salt Lake. Hailey still hasn't eating and I give teaspoons of water, but I know it's not enough. We stop at a Maverick and pick up one of Hailey's favorites....Pizza and holy smokes she is eating. Super tiny bites but it's going down! Finally she is hungry and I feel relieved until...she vomits! Ugh... So we stop and clean her up and continue to the hotel.

We get there and decide to try another one of Hailey's favorites...Panda Food. HA HA ! She likes Panda Express and used to call it Panda Food. So Josh and I leave her with the grandparents and get Panda Food. She barely eats any of it though. That night was ROUGH. Screaming, crying waking every 10 minutes, rotating her more crying this time me. When it was morning and everyone was awake I asked how everyone enjoyed their 20 minutes of sleep last night?

We gather our things and head into Vegas. Hailey sleeps and cries and we let her bite on our hands and fingers. It seems to calm her and if my sanity is saved but I loose a finger so be it right. It was a long trip home but we finally make it and it's a Sunday. She is still not eating or drinking enough.

Josh's dad heads home, but his mom stays to help and my mom is here too. Monday all day she is in and out of sleep but awake most the day, night time comes and she is screaming and crying and having spasms and is in such pain. She was due for her baclofen at 10 pm it was 8 so I give her some tylenol to get the edge off but it doesn't work. More screams and crying. I call Utah at 3 am and talk to the Rehab doctor on call and tell him I gave her the medication at 10 and she is screaming. He said to give her a double dose and then increase the dose thereafter so I did. Well...now all day Tuesday it's like she is in a coma. She won't wake up, she won't eat, she won't drink. She didn't sleep the night before so she is sleeping now. She was due for her medication at 2 am but she slept through it...we all did. 4 am rolls around and she is puking, but she hasn't eaten so there is nothing to throw up. Her eyes are rolling in the back of her head and she can't look at us. We were in the emergency room with in 15 minutes. We are back in the hospital after just being released from the hospital. This time we are in Las Vegas though. What is going on now? What could possibly be wrong with Hailey? I had no idea what I was in for or what Hailey would have to endure now...

1 comment:

Jessica....I never have commented on your posts. Will now though. You do such a good job telling how it was/is. Simple words. Straight forward. No doubt what you mean. It's a story everyone can relate to......what if that we're my child? Would I be as strong as Jessica and Joshua? How would we handle this? Well.....

Hailey is our family's Baby Girl. And, she is so good natured and strong and such a smiley social butterfly girly girl. She takes after you and Joshua and the example you have set for her. She is a lucky little girl to have the two of you as parents. We are lucky to have you a part of our family. Love you